UK: #JusticeforME fundraising for legal case for UK Government to provide specialist ME/CFS medical care
- Thread starter OrganicChilli
- Start date
MrMagoo
Senior Member (Voting Rights)
Justice For ME
They have added some personal profiles on their fundraising page:-
Catherine Hale, Naomi Bem, Madeleine Wallner, Galen Warden, Sarah Boothby
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
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Beth
Established Member (Voting Rights)
Seen on bluesky a post asking for severe/very severe to fill out a form, time sensitive call for evidence, but can’t find any other info about what it’s for or why, can’t post the link because I’ve already forgetten the forum rules for social media posts, if any one else can it’s Sarah boothbys account
Yann04
Senior Member (Voting Rights)
MrMagoo
Senior Member (Voting Rights)
An update via email today
Our claim is supported by fresh evidence from people with severe/very severe ME, all living in the same fear of NHS ignorance of how to safely manage PEM (post exertional malaise) in England and Wales.
We also cite a number of Regulation 28 Reports on the prevention of future deaths from ME/CFS.
The former Minister, Ashely Dalton, published the Plan for ME in July 2022 with these words,
"I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed."
Politicians do nothing for their reputations when such words are backed by inaction.
Thank you for your continued support. Please share this update with people you know, especially anyone without direct experience of the illness, and help us raise awareness of this injustice. We could not do any of this without you.
On Friday 1 May our lawyers issued our second letter before claim. Our challenge is in direct response to the Government's announcement on 24 March that it would not begin to consider NHS provision for severe/very severe ME before April 2027. We are challenging this as a failure to protect people with severe/very severe ME from the NHS neglect under Articles 2, 3 and 14 in the Human Rights Act (1998).
Our claim is supported by fresh evidence from people with severe/very severe ME, all living in the same fear of NHS ignorance of how to safely manage PEM (post exertional malaise) in England and Wales.
Thanks to everyone who responded to the call. It was a big ask with very little time for replies due to the urgency of our claim. The responses were hard to read but demonstrated how widely these horrors are felt. An underestimated 100,000 people are at risk, without including everyone meeting ME diagnostic criteria following Covid infections.
We also cite a number of Regulation 28 Reports on the prevention of future deaths from ME/CFS.
The former Minister, Ashely Dalton, published the Plan for ME in July 2022 with these words,
"I know that those with severe or very severe ME/CFS, and their families and carers, have often felt particularly let down by those systems and I am painfully aware of patient safety concerns, and even tragically avoidable deaths of people with ME/CFS, in England. These must become never events. There are also inequalities in service provision that need to be addressed."
Politicians do nothing for their reputations when such words are backed by inaction.
Government has until 12pm on 15 May 2026 to show what they will do under the new Minister, Sharon Hodgson.
Thank you for your continued support. Please share this update with people you know, especially anyone without direct experience of the illness, and help us raise awareness of this injustice. We could not do any of this without you.
Chandelier
Senior Member (Voting Rights)
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
SteveFifield
Established Member
I desperately want “consider convening a committee” to sound a bit more meaningful than “thoughts and prayers”, but I can imagine any leader or department using either of these expressions without consequence.
I want to see the word "Implement" or even simply "Define", "Report" or "Analyse"? But hasn’t most of that been done already?
I want to see the word "Implement" or even simply "Define", "Report" or "Analyse"? But hasn’t most of that been done already?
BrightCandle
Senior Member (Voting Rights)
There has been no doubt for years this is going to require legal action. All government ministers have ever done is constantly delay.
Chandelier
Senior Member (Voting Rights)
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
NHS care for ME now
by #JusticeforME
22 days to go
£18,867 donated of £25,000 stretch target from 605 pledges
Sept. 4, 2026
Raising another £5,000
We need your support to raise a further £5,000 as soon as we can to challenge the broken promises and further delays posing a significant risk to life.
Please share this call for funds with everyone you know and help our lawyers give voice to people too unwell to speak for themselves.
Detailed clinical information has been available now for years, that should be shared with healthcare providers across England to prevent further deterioration in the health of those with very severe ME and Long Covid.
Prevention of future deaths reports are published, year after year, intended to kick start a set of actions to prevent the same scenario happening again. Yet, since publication of the Final Delivery Plan for ME in July 2025, no steps have been taken or concrete measures been implemented.
The Final Delivery Plan was expected to publish an update on progress this summer but, yet again, there is no movement.
So, while meetings are abandoned, guidelines dismissed and service specifications dangle in draft, the daily suffering will continue for some of the most poorly people in our society, and their loved ones. We will not stand by while this happens, and we ask you to stand with us.
We have been patient and offered collaboration, but regrettably there is now only one way to drive change forward. The UK Government has failed to deliver on a duty of care for those with very severe ME and it is time to hold them to account.
We cannot do this without you and we thank you deeply for your support so far. An additional £5000 will enable our lawyers at Rook Irwin Sweeney to challenge the legality of the further delay announced by government. Please give as generously as you can afford, and share widely with everyone you know.
With deep gratitude,
The Justice for ME team.
MrMagoo
Senior Member (Voting Rights)
An update from Justice 4 ME
www.crowdjustice.com
The news is they are looking to raise another £5k for legal work
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
www.crowdjustice.com
The news is they are looking to raise another £5k for legal work
